Saturday, May 14, 2011

For the parents who had to wait longer to hear a first word, who spent more time in doctors offices with their child than on play dates, who endure countless bad days and the stares from other people...For the parents whose child's first friend was their doctor...For the parents who face special needs everyday...WE SALUTE YOU ALL. Re post if you are proud to be or know a family with a child with special needs."

This was posted on facebook by my brother in honor of his nephews Cole and Cale.
My brother, Kenny, has his on personal history with matters of the brain and its limitations and frustrations. I watch him struggle after his motorcycle crash. He struggled to regain his mobility and even more so his command of the vast knowledge
his mind possesses. This is not my usual sarcastic humor the he and I banter back and forth. He has made a miraculous recovery.

When I first saw him in the emergency room ICU, I could not see how he would live much less recover to be just as obnoxious, innocuous and hardheaded as he ever was.
In short the brother that I love and care for.

Thank you little brother for being you.

It is an off week for Cole and Cale. They are with their Mommy and hopefully their Daddy. It is a quiet Saturday morning here on the end of Plantation Drive. Almost to quiet. But it gives me time to remember last weekend and the moments that make being a grandparent great.

One of those things is that you can share Cole and Cale's unbridled joy and love with their other Grandparents. Barbara and Kirk came to pick the children up Saturday afternoon from our house. About 30 or 40 minutes before they arrived Cole and Cale were in the swings. Marcia came out to tell them Nana and Papaw were coming. Their faces lit up and the clapped with such spontaneity, joy and enthusiasm as the scream out, Nana, Papaw over and over.

Then Cole, expecting them to drive up at any minute, said "open the gate, Pappy, open gate. I told him we would have to wait for a few minutes. He and Cale kept their eyes glued to the back yard gate for the next 10 or 15 minutes as they continued to swing. Every time a car would pass on the street they both would rise up in the swing seat only to sink back as it passed without stopping. Then with much effort we diverted their attention and they began to play in their cars and on the trikes.

Barbara called as they were getting closer, but we did not say anything to Cale and Cole. When they pulled their car into the drive and the gate opened it was shouts of Nana, Papaw. Both Cole and Cale jumping, clapping and then running to their Nana and Papaw.

Now I have to admit I had a tinge of jealousy and a slight feeling of rejection. It was short lived because the joy and enthusiasm of those two little boys is infectious. That along with knowing why they are so glad to see Barbara and Kirk.

It is more than comforting knowing the circle of love and caring that exists for these little boys. A circle that we now know extends to their big boisterous, gregarious and amazing Uncle Kenny.

All that said, Cole and Cale's language skills are getting better every time we see them. Cole told Marcia he wanted "sausage and eggs" for breakfast last Saturday, Cale added "me too". That was a new one for him.

Cale has mastered all the cut out puzzles we have, so we will have to find some new ones. Cole has worn the pages out of his "Thomas" books. So the same is true for those. Cole has become less interested in the "DVDs" of Thomas. He still puts one in the player and turns every thing on but does not tune every thing else out. He plays with toys more and with Cale. However he stops most times when the the musical sessions come on. He claps and dances to the music with a pretty good sense of rythym.

I will leave it there, but below you will find links to Fragile X Syndrome information. If you would like to know the causes, symptoms, treatments, research and statistics please visit these sights. A cure for Fragile X would be the greatest thing for these children which may be achievable, but a future where people are educated about their condition, understanding and supportive is acheivable. Please help.

Monday, May 2, 2011

Recently in the Valdosta Daily Times Rant and Rave section a reader posted a rant concerning a child that was screaming in a store and the mother was ignoring the child's behavior. The ranter seemed to be taking both displeasure at the behavior of the child and the behavior of the mother. The ranter went on to give advice on the discipline need by the child. Offering that such a poorly behaving child should not be out in public. In a subsequent rant posted by another reader it was suggested that the child should be put on a leash.

A year ago I probably would have agreed with both ranters. "Children should be seen and not heard". There are children with behavioral problems that can be addressed with the usual disciplinary actions. There are children with developmental disorders that have behaviors that cannot be addressed with the same methods. I have learned not to be so quick to judge.

If your children are grown or if you never had children at all it is easy to draw quick conclusions as to "what I would do if that child was mine". Think of it in this light. That child needs support from the grown ups around it. If we all grow old we too will seek support from the "grown ups" around us. Remember the old addage, what goes around, comes around.

That said,

Where do I start? I want to keep this interesting to everyone that takes the time to read my ramblings about my two little buddies and their big sister, AKA "the pill".
Erin, Cole and Cale were overnight guests Friday. As usual they push Marcia and I to our physical limits.

Having all three, Erin, Cole-Man, Cale, changes the dynamic. When Erin is here by herself she is completely independent of Marcia and I. She wants to do everything for herself. Throw the two boys into the mix and she has to be in the middle of everything. Telling the boys what and what not to do, telling Marcia what they want and don't want. She trys to mother the boys and protect her status as NO. 1 at the same time. It is sometimes humorous and sometimes frustrating. I truly feel for her Mom, Brandi. Forty eight hours of Erin's struggle to be both protaganist and antagonist wears me out. But still as soon as she and the boys leave I miss them all.

That aside, Cole played hard from the time Brandi and Chris dropped them off till he went to bed. Driving his push car, trying to ride the trike and swinging in his swing. They all went upstairs around 8:30 and had their bath and dressed for bed. Marcia sleeps upstairs with them when they are here and I sleep downstairs.

About 2:15 AM, I hear this little voice. "Pappy, Pappy, where's Pappy". It is Cole-man. Marcia puts him in the bed with me and goes back up stairs. Cole talks and jumps and gets out of the bed. Turns on the TV. Then he wants to watch "Thomas".

"Thomas is on the DVD in the den. So I grab a blanket go to the Den, get in the recliner. Cole turns on the TV puts "workshop" in the DVD and climbs in my lap.
Then he says,"need pillow, need pillow Pappy". I tell him "well go get a pillow".
He climbs down, goes to the Bedroom and returns with two pillows. Gives me one and crawls in Marcia's chair with the other. I am thinking good he will go to sleep and then I can put him in the bed. Right!

Once he is in Marcia's chair, he calls out,"Pappy, covers, covers Pappy. I get up and give him a comforter from the couch. Again thinking in a matter of minutes he will be asleep. Wrong!

He climbs out and retrieves his "Thomas" book. Climbs back in my lap. "Read Pappy, read. He points to the first page and smiles as he say "click clack, click clack" the words on the first page. He turns a few pages and points, "Hiro stuck in mud" then turns the page and says, "uh-oh Spencer" then turns a page or two. "Hooray for Hiro" he says as he points to the page. We repeat this for a few more minutes, then he changes the DVD again. "watch splish splash" then watch "Thomas bration"(celebration). This goes on until about 5:15 before he finally goes to sleep in my lap and I carry him back to bed where we both sleep until we are rudely awaken by his "Granny" at 7:00 AM.

Needless to say I was not a bundle of energy for the rest of the morning.

Back to the book and the pages that Cole recognizes. Don't know what it is he recognizes that allows him to repeat the words printed on those pages but he does put the right pages together with the words. Not only that he uses the right inflections on the words in the context of the story. He raises his eyebrows and draws his mouth into a circle and takes a deep breath as he say "uh-oh" then claps and bounces as he says "hooray for Hiro".

Doesn't sound like much for a five year old, but it is light years from where he was a year ago.

Then there is the other side. He don't like bandaids. Marcia put a little ointment on an insect bite that was red. Then she put tried to put a bandaid over it. We got the bandaid on, but he wanted it off. "Take it off, take it off". Then we struggled to get it off. Then he wanted the one Marica had put on Cale off also. He tried to take it off Cale's leg.

"Band aid off, Cale. Bandaid off Cale. Cale don't want it". As soon as we took Cale's off Cole calmed down and everything was fine.

Cale is making progress as well. He is talking more and asking for the things he wants and wants to do with short phrases. He still is hard to understand at times but he is definitely putting words together. Cale is not as attracted to the DVDs as Cole. He plays with toys and puzzles more. He loves to climb. He is constantly on the kitchen table or our bed. And he loves to emulate everything Cole does. If Cole swings, Cales swings. If Cole gets in the "car", Cale gets in his car.

I try to get each of them to count when they are here. In the swing I get them to count 1,2,3 before I push swing. Cale is counting up to 6 on his on in the swing but as he went up the stairs on his way to bed he counted the stairs 1,2,3,4,5,6,7,8.

They are learning and every little bit is a blessing.

I will go now, but I will ask that you consider supporting a children's charity.
There are many and I hope that you will visit FRAXA support research into causes and treatments for FRAGILE X. FRAGILE X is the genetic disorder that affects our Cole-man. Below is a link to an article on drugs being tried to correct Fragile X syndrome. Again Thanks.,0,7738702.story

PS: Congratulations to my friend Austin Lodge and his bride Keri.